Sam. Conqueror. Overcomer.

On the 15th May 2009, Samuel Christian made his way into this world...two month's premature and in severe respiratory distress. Within hours, Sam was diagnosed with Rubinstein-Taybi Syndrome - a very rare congenital disorder, of which little was known. The diagnosis together with the immediate challenges Sam faced to thrive became our core focus and it was with joy and thankfulness that we eventually brought Sam home, after nine weeks in the NICU.

As time pressed on, it became obvious that Sam's development was falling behind that of his RTS peers. Shortly before his 5th birthday Sam underwent a brain scan and it was confirmed by a paediatric neurologist that in addition to Rubinstein-Taybi Syndrome, Sam also has Cerebral Palsy related to his premature birth, as well as Autism.

This blog chronicles our journey through these challenges...

SAMUEL - COMPLETE IN GODOur world has crashed, been blown apart.This can't be happening....why us? Why now?Your fragile life shaken before it could barely start,How do we get through this...please, Lord, tell us how?

Drowning in our sorrow, waiting for answers that just don't come.Our baby "special needs"? It simply can't be true!The heartache overwhelms us, we're left feeling cold and numb. The diagnosis tells us little - these children are so few.

But then we finallyget to touch you, to see your precious faceAnd all the heartache and questions fade, replaced with love and pride.It's obvious from the very start you're showered in God's grace,And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.When once the future seemed dark, we now welcome the journey as having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!This IS happening....to us.....right now!We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....By believing in a God, so merciful and great,By trusting that He's right beside us as we journey through the narrow gate.By believing His love for us is not determined by a human frame,By trusting that we draw Him near by merely calling His name. This precious baby we asked God for,Prayed he'd be perfect and complete.And, as Samuel means "God hears", He's laid His answer at our feet.

(Nicky de Beer : 27/05/2010)

Tuesday, September 2, 2014

A letter...

To the Sibling of a Child with Special Needs

You’re on my heart more than you know. I know sometimes you feel like your sibling gets all the attention and I don’t notice you, but it’s not true. Entire days go by that I ache because I am so tied up in dealing with the newest symptoms, medications, and endless consultations with specialists and therapists that I don’t have time to sit down and talk with you, listen to you, like I really want to.

I see the tears you cry when a new set of symptoms means seeing another specialist, and we don’t know how many times we’ll have to travel to get to an appointment there, how many years we’ll need check-ups with that particular specialty.

I see your frustration and sadness when you witness another meltdown, are told about another surgery, or have to endure your sibling being in the hospital yet again. I see your struggle to help out when you’re asked to in situations where your dad and I aren’t around and other adults ask you to step in when they don’t know what to do.

Just let me say this:

You’re a child. You’ve had to take on far too many “adult” responsibilities and grow up way too fast already. I’m already wondering if you’ll end up being the one responsible for your sibling after your daddy and I are gone, and how you will handle that. Please enjoy being a child and let me take the burdens I can remove from your shoulders. They’re far too heavy for you. I’ve said it before, and I’ll say it again: When something happens and adults turn to you, do immediate damage control and send them to get us. You are not responsible for handling the situation alone.

You are loved more than you can imagine. I see you, I see your pain, and I see the sacrifices you make every day—to not rock the boat, to not cause us any trouble, and to help in every way possible. I love you for trying to be the “perfect” child and not cause your daddy and me more stress. Please see You’re a child. above and know that we don’t expect perfection. We don’t expect you to be able to avert every meltdown. We love you exactly as you are, mistakes and all.

I love who you’re becoming. Despite the frustration, anger, sadness, and other negative feelings you experience from time to time, I love who you’re becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use the experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.

I love your love for your sibling. I am always amazed at how you are the first to defend your sibling when someone says something unkind. I love how you play and share life together. Although at times your hurt is deep, your love is deeper, and I am so grateful for that.

I’m sorry. For all the times you’ve felt neglected, unseen, unloved, or unwanted, I’m sorry. Please forgive me. I am making an effort to find ways to spend more alone time with you—both in little moments we can steal at home and in times we can go out together for a soft drink, meal, or to browse our favorite stores. Balancing everything gets difficult in certain seasons, and I am trying to get better at it.

You are amazing. And don’t you ever forget it.

I’m here for you. I love you every bit as much as your sibling, and I want you to know that I’m here for you too. We only get one chance at your childhood. Let’s put the mistakes of the past behind us and make the most of every moment!

No comments:

Post a Comment

Sam

Sam - 4yrs

Baby Sam

Worthy

Faith

Kids

Sam

Love

Precious

"Suffering overcomes the mind's inertia, develops the thinking powers, opens up a new world and drives the soul to action." (Anthony Harrison Evans)

We Believe in the Power of Prayer

"Is anyone of you in trouble? He should pray. Is anyone happy? Let him sing songs of praise. Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up."

"The prayer of a righteous man is powerful and effective."

God shapes the world by prayer. The more prayer there is in the world the better the world will be, the mightier the forces again evil..." E.M. Bounds

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation.

SAMUEL - COMPLETE IN GOD

Our world has crashed, been blown apart.
This can't be happening....why us? Why now?
Your fragile life shaken before it could barely start,
How do we get through this...please, Lord, tell us how?
Drowning in our sorrow, waiting for answers that just don't come.
Our baby "special needs"? It simply can't be true!
The heartache overwhelms us, we're left feeling cold and numb.
The diagnosis tells us little - these children are so few.
But then we finally get to touch you, to see your precious face
And all the heartache and questions fade, replaced with love and pride.
It's obvious from the very start you're showered in God's grace,
And with His love and guidance, we'll take this challenge in stride.

When once we couldn't pronounce it, Rubinstein-Taybi's become our norm.
When once the future seemed dark, we now welcome the journey
As having an RTS angel brings lessons in unexpected form.

Our world has crashed, been blown apart!
This IS happening....to us.....right now!
We've been blessed with a gift, so precious from the very start. How do we get through this? Here's how.....
By believing in a God, so merciful and great,
By trusting that He's right beside us as we journey through the narrow gate.
By believing His love for us is not determined by a human frame,
By trusting that we draw Him near by merely calling His name.
This precious baby we asked God for,
Prayed he'd be perfect and complete.
And, as Samuel means "God hears",
He's laid His answer at our feet.
(Nicky de Beer : 27/05/2010)